Cinder Bridge

Saturday, November 19, 2016

Bookmans had hired us to play a two-hour set. Ron the Drummer and I were talking to the staffer during our break when the election came up. As weary as I've been of politics lately, it made me feel better. Because the first set had been weird.

It went well, mind you. People were responding really positively to us. One woman requested that we play a song we'd debuted at a previous gig. A few others came over to sign up for the mailing list and/or buy a CD. But this was our first post-election performance, and—as has been the case every time I've ventured outside since November 8—it was strange to see people walking around and shopping and being happy as if everything were normal. Strange to play and to chat up the crowd as if everything were normal. Tucson, though located in a red state, is a blue city; I was fairly confident that over 50 percent of our listeners shared our sentiments.

Anyway. The second set felt better, even though we didn't play any differently. After hearing somebody besides me acknowledge how not normal everything was, things seemed more ... normal.

Of course everybody was going about their lives. It's not like those of us who were unhappy with the outcome were going to do anything else.

Thursday, September 22, 2016

At long last, the travesty known as the PACE trial has been debunked, and the ME community is in a celebratory mood.

Don't have the slightest idea what I'm talking about? Lemme back up.

Every now and again for the past eight years, I've been writing posts on this little band blog about a disease called myalgic encephalomyelitis, aka ME, aka ME/CFS, aka "chronic fatigue syndrome." Symptoms commonly include chronic, debilitating pain; greater susceptibility to fatal cancers and heart failure; crushing exhaustion that isn't relieved by rest; and post-exertional morbidity, in which symptoms get worse after even mild physical exertion.

(Remember the bit about post-exertional morbility. It will become important soon.)

Because the cause of ME is unknown, many doctors have written it off as being all in the person's head. Back in 2011, a group of UK researchers championed that belief, theorizing that ME develops like this:

Patient becomes ill with a legit virus

When patient gets over the legit virus, they find physical activity more difficult due to deconditioning

Patient develops a fear of physical exertion because it's more difficult

Deconditioning becomes worse due to prolonged lack of activity

Their proposed solution: Get ME patients to exercise just a tiny bit, then increase the amount of time they devote to exercise in tiny increments. Eventually they'll realize that exertion won't hurt them and they'll get over it. In the meantime, therapy will help them challenge their supposedly false illness beliefs.

And so they tested their hypothesis in a study they called the PACE trial. The results (they said) supported their claims. Significant numbers of people (they said) recovered after receiving graded exercise therapy (GET) and cognitive behavioral therapy (CBT).

Great news, right? But actual ME patients were angry. They knew from experience that if they tried to exert themselves past a certain point, they would feel a lot sicker (see "post-exertional morbidity" above). GET was the worst thing they could try.

Further, the methodology was hinky. While a number of flaws graced this study, I'll focus on just one: the definition of "recovery." Before the trial began, the researchers decided how healthy the subjects had to be after treatment for them to count as recovered. After the trial ended, the researchers changed their definition of recovery to include sicker people.

The result: some subjects who were sick enough to get into the study in the first place would count as "recovered" at the end, even if their health remained exactly the same.

The more science-savvy members of the ME community asked to look at the researchers' data so they could do their own analyses. The researchers—some of whom happen to have financial ties to disability insurance companies—refused to give it up.

And that's how things stood until October 2015, when journalist David Tuller published a huge article exposing all the flaws. Finally, parties outside the ME community started paying attention. More people requested the data. An ME patient named Alem Matthees forced them to release it through a freedom-of-information request. He and some other patients did analyses on it and came to a SHOCKING conclusion about the study:

While playing at Bookmans on Speedway, a crowd of young people dance-walked past us along with the music. I couldn't tell if they were genuinely grooving or if they were making fun of us. The song, Ten Years Later, is kinda sappy, not the sort of thing I imagine the yoots dancing to, so I had to wonder.

Later, though, somebody who came to see us said she saw those kids dancing to other songs earlier, and they seemed really into them. Cool!

Ron and me at Bookmans, not the Bookmans on Speedway where we just played, but a different Bookmans because we didn't get any pics of us at Speedway

Tuesday, August 30, 2016

Any moment that Gene Wilder died was going to feel like it came too soon. Still, I find this comforting:

As our hands clutched and he performed one last breath the music speaker, which was set to random, began to blare out one of his favorites: Ella Fitzgerald. ... She was singing “Somewhere over the Rainbow” as he was taken away.

Not everybody gets to go out while hearing one of their favorite songs.

Thursday, May 12, 2016

If you're new to this band blog and you've never heard me sound off on ME/CFS, you may be thinking, "What is ME/CFS, and why should I be aware of it?" I'll answer that question and others in a handy FAQ format.

What's ME/CFS?

The "ME" part stands for myalgic encephalomyelitis. The "CFS" part stands for chronic fatigue syndrome.

Oh, chronic fatigue syndrome! Yeah, I've heard of that. I don't get what the big deal is, though. I get tired too.

ME/CFS isn't just being tired. Symptoms vary from person to person, but commonly include:

chronic, debilitating pain

post-exertional morbidity—symptoms get worse after physical or mental exertion and require an extended recovery period

flu-like symptoms, such as joint and muscle pain

cognitive impairment, including problems with short-term memory

crushing exhaustion, which is not relieved by rest

Other common symptoms include cardiac arrhythmias, chemical sensitivities, food sensitivities, blurry vision, eye pain, irritable bowel syndrome, and a host of other conditions that are nasty in their own right.

A friend of mine says she has this thing, but every time I see her, she seems fine. I think she's just a hypochondriac.

Probably not. It's typical for sufferers to have good days and bad days (though a "good day" can still be pretty bad from a healthy person's perspective). If you see someone with ME/CFS out and about, you've probably caught them on a good day. You don't see them lying flat on their back for the rest of the week, in the privacy of their own home, recovering from their trip to the grocery store.

Is there a cure?

No.

Any hope for a cure sometime soon?

Hard to say. The Open Medicine Foundation is working to discover biomarkers and effective treatments, but this disease gets very little funding. And despite the considerable evidence that ME/CFS is biological in origin, much of the funding it does get goes toward questionable psychiatric research.

Wear your underwear on the outside of your clothes. (It's a fundraising thing, like the ALS Ice Bucket Challenge.)

Join #MillionsMissing on May 25 to protest the lack of funding for ME/CFS research.

If you're too sick or too far away to make it to any of the #MillionsMissing physical protest sites, get involved with the virtual protest.

If you have a friend with ME/CFS, make an effort to keep in touch. Your friend may not have the energy to call you, but he or she would probably love to hear from you.

If someone you know makes a comment about how chronic fatigue syndrome is just laziness, don't let it pass. Explain that ME/CFS involves serious pain and real impairment, not just greater-than-average tiredness.

Hey, you said this was a band blog. How'd you end up doing ME/CFS advocacy? Seems kinda random.

Same way anyone ends up doing disease-related advocacy: I know someone who has the disease. He had an amazing career and a great life. Now he lies in bed all day, in pain, unable to do any of the things he loved. It sucks. There aren't words to convey how much it sucks.

But being a songwriter, I wrote a song about it. "Everybody Knows About Me" is told from the perspective of someone who lives with the disease ... and other people's prejudices.

So that's something else you can do:

Send "Everybody Knows About Me" to anyone who might benefit. That includes people who have the disease and people who don't understand it. You can stream it on our website or download it for free on this page (top of the sidebar). Once you've obtained it, make as many copies as you like and send it to as many people as you like.

Monday, January 11, 2016

Listening to the radio on my way home from rehearsal tonight, I caught a few live David Bowie tunes, which KXCI played in honor of his 69th birthday. I thought about how there'd be an even bigger deal made next year, on his 70th birthday. I wondered what he was up to musically. And thought about how, although he wasn't old old, someday I'd hear of his death. I hoped it wouldn't be soon.